Challenging Methodological and Ethical Conventions to Facilitate Research That Is Responsive to People with Learning Disabilities
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People with learning disabilities continue to be denied the opportunity to be actively engaged in the production of research. In this chapter, we draw on two studies in which we attempted to be inclusive of people with learning disabilities. The first study explored experiences of women with learning disabilities in relation to mental health; the second study delivered an intervention designed to reduce falls for people with learning disabilities. We address four aspects of the research process in both studies that highlighted the importance of ethical considerations that take into account inclusivity, recruitment, informed consent, communicating research-related tasks, and interview approaches. We outline how relational ethics should be central to efforts to be responsive in research that is inclusive of people with learning disabilities.
We would like to acknowledge the New Zealand Lottery Grants Board, Lottery Health Committee, and the Health Research Council who funded respectively the two studies referred to in this chapter. Finally, we express our appreciation for the contributions of all those people who contributed to the research described here in a myriad of different ways.
- Frankena, T. K., Naaldenberg, J., Cardol, M., Meijering, J. V., Leusink, G., & van Schrojenstein Lantman-de Valk, H. M. J. (2016). Exploring academics’ views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: A modified Delphi study. BMJ Open, 6(8), 1–11. https://doi.org/10.1136/bmjopen-2016-011861 CrossRefGoogle Scholar
- Griffin, T., & Balandin, S. (2004). Ethical research involving people with intellectual disabilities. In E. Emerson, C. Hatton, T. Thompson, & T. Parmenter (Eds.), Applied research in intellectual disabilities. Chichester: John Wiley & Sons.Google Scholar
- Ouellette-Kunntz, H., Lunsky, Y., Lysaght, R., Martin, L., & Saaltink, R. (2013). Partnering in the field of intellectual/developmental disabilities—Lessons for participant recruitment. Journal on Developmental Disabilities, 19(2), 25–35.Google Scholar
- Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers.Google Scholar